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Showing posts from October, 2011


It is hard to believe that one year ago this month, Shelbie got sick with ITP.  Like everything that happens to us, I thought, surely this isn't going to last forever.   Well, it hasn't lasted forever but it has been one long year that at times, felt like forever. 

I remember clearly that wintery, spring day, staring out the large window in her hospital room hoping  the answer would be written in the glaring snow covered roof below.  The doctor had just left, announcing that all the treatments we had tried were no longer an option and presented three new alternatives. All three had a suck factor to them. 

One was a pill that would surely scar her bone marrow leaving her unable to be eligible for a transplant.  The second option was a spleenectomy.  The spleen is a vital organ of immunity.  Losing that would make her forever susceptible to infection and the odds of curing ITP were very slim.  Our third option was chemotherapy.  The kind of chemotherapy they suggested using, t…

Not ready for this!

I guess this is part two to the heartbreaker post.  This young man that came into Shelbie's life this week is really taken with Shelbie.  They have gone out three times and have had a great time.  He is kind to her and respectful and that is refreshing cause Shelbie has never been treated that well by boys. 

Last night, she decided since he was getting more serious, it was time to let him know that she is not your average girl.  Well, he didn't take it all that well.  I didn't take it all that well, and Shelbie didn't take it all that well.  It just sucks that reality has to be faced. 

Any guy that falls in love with Shelbie or girls that love my boys for that matter, have to know they are falling in love with disease.  This stupid disease that changes every day.  No two days are ever the same!  They are signing up for a life of financial strife!  That's a lot to take on and overwhelming to think about.  It's hard enough these days for a girl to find just a r…

A Heart Breaker

Some 12 years or so ago, I knew in my heart I needed to be prepared for a lifetime of health problems.  I did what I thought would prepare us for the ups and downs that Shwachman Diamond Syndrome would surely offer us.  I tried to stay vigilant with their medications, quarterly blood draws, semi annual appointments with specialists and nip whatever came as quickly as possible.  I kept the house and their hands as clean as possible, free from microscopic havoc.  I planned fun things, lasting memories.  I read books and articles, health journals and other mother's journals.  Their well being and happiness was my only concern.  It still is.

I was excited that Shelbie had been asked on a date last night.  I was excited that for one night, she would experience life as a normal 19 year old girl, bon fires and smores with a nice young man to share it with.   InI had visions of helping her get ready and sharing in the excitement then waiting anxiously for him to come to the door. 

Well, i…

Because I know

Would you want the ability to see into your future?  Would you want to be able to see the future of your children?  See the problems coming, the opportunities at each fork in the road?  If you had that knowledge, how would tomorrow look as opposed to yesterday?  What would change?

I have a little bit of knowledge, maybe more so than the average guy on the street as to the direction my life is going or at least the direction of my kids.   It's not the whole picture by any means but its enough information that it changes things.   It changes how I view the world, the choices I make.  Each decision is weighed heavily against my priorities and those priorities are set according to my prize possession- my kids. 

Because I know a little bit about how the health of my kids is going to deteriorate, I do everything in my power to make the most of each day.  I like to think I have more control than I do.  I like to think I can keep them in a bubble to preserve their health, keep them germ…

The Things We Do...

To be normal! 

I hate being abnormal.  I'm sure none of us really love being set apart from the mainstream of life.  We all want to fit in, hasn't it always been this way?  From the moment we set foot in kindergarten, we realize what it takes to be a part of the greater whole.  When we deviate, we quickly learn how to take the bullying or fall back into line and run with the crowd.

On the weekend, I had to make a trip to a neighboring town to the home of a family I know is struggling. Their struggles right now are pretty devastating.  Their family life is in a shambles but they don't know that I know.  Still, when I came to their front door, the facade of happiness was oozing from the hinges.  A smile with hollow eyes filled their faces. I left feeling very curious, wondering what is so hard about being honest. 

From Shelbie's seat in the car, she noticed the same uncomfortable emptiness and said, "Why are they trying so hard to look like everythings okay?"…

Deeper feelings

This week on the mitochondrial Facebook page which I am a groupie of, a member posted a link to an article written by a mom whose only child has a fatal genetic disease called Tay Sachs.  It is a beautifully written and touching memoir of motherhood and chronic illness.  If you want to read it, grab yourself a tissue or two and read it here.   I've read it three or four times and each time the connection I feel with this mother, Emily Rapp is amazing.  She verbalizes what I so often feel.

I sort of feel guilty even trying to compare myself to her.  I have had much more than 3 years with my kids and will probably have many more but lots of the feelings I have are an echo of hers.  I too have learned many lessons over the years, some the hard way.  I have learned how grief and sadness can change you into someone who loves deeper and cares more.  It's changed the way I see my children and myself.  We don't wait for tomorrow, we live for today.

Everyday brings with it a new set…


Shelbie had her IVIG infusion on Thursday.  I am so happy to report it was by far the best infusion to date!!  I never thought I would see that.  We finally had a nurse that actually took into account my opinion and listened. 

I overheard the hospital pharmacist tell the nurse not to worry about titering the dose because she has had it so much.  He suggested she run it through in one hour.  That is lightening speed!!

When the nurse came in, I told her I didn't agree with the pharmacist and really wanted it to be run slow.  We had scheduled out the entire day and it's not like they had anywhere else to be for 12 hours so we ran it over 6.5 hours.  The nurse also suggested a different pre med schedule and so we went with that as well. 

For the first time ever, Shelbie didn't have any bad reactions during the infusion.  She never ran a fever like in the past and the nausea never really caused her any discomfort.   Tonight even, the side effects are not nearly as bad as they…

Another mixed bag

This week has been crammed with doctor appointments and hospital visits.  All things considered, every visit went well.  Hmmmm, where to start.   I guess with Boise. 

We arrived in Boise on Tuesday night.  We ate and then headed to our cheap hotel.  I was so tired.  I love staying in Hotels because it's one of the few times I know my kids have no reason to leave.  They can't hang out with friends or go on any outings so while they are chillin on the beds watching tv, I went to bed.  It was only 9:30 and I was so happy to have the chance to get more than 4 hours of sleep.  As my luck goes, I could not sleep to save my life.  I was so bummed when I 'woke' up more tired than when I went to bed. 

Anyways, I digress.  Our GI, Dr. Thompson is one of my favorite doctors.  He is the guy who started it all, made the final diagnosis on my kids almost 12 years ago.  He always spends so much time with the kids and gives them all sorts of good information they can use.  For inst…

Status Quo

This week, Shelbie continues to fight cellulitis, the skin infection on her stomach.  The antibiotics have helped and definitely kept her out of the hospital but as always, it's slow healing.  Another weird development that cropped up today was petechia! 

I'm not entirely sure what that means.  Could be nothing.  In the meantime, she is coming down with a cold this week and her eye infection is back again. 

For now, I'm not going to worry about this.  We are getting ready for a trip to St. Lukes this week.  The day after we get back, Shelbie will be at the hospital here for her IVIG infusion. 

My hope this week is that our GI doc in Boise will be able to find something to give relief to the boys and their recurrent and chronic nausea.  It is getting old! 

Calm before the storm

I should know by now that it's better to just let the peaceful moments roll on by without me 'noticing' because whenever I mention how happy I am with the little break from stress, we get slammed!  Isn't that a law of Murphy or Confucious or something. 

About a bazillion things happened today to test my patience and my faith.  Last week, Shelbie developed this little pin dot of a pimple or something on her stomach.  I didn't think a thing of it.  Over the weekend, it got bigger and bigger and now covers a large portion of her stomach.  I ran her into the doctor and it was on the verge of cellulitis. 

What is cellulitis you ask?  It is not the dimply, dents women tend to get on their legs.  It's an infection.  A serious bacterial infection of the skin.  Without treatment, it can spread quickly to the blood.  In an immune compromised person like Shelbie, it is very, very serious. 

She started a high dose of oral antibiotics and topical antibiotics but if ther…

A moment of peace

It is amazing the night and day difference that IVIG makes for Shelbie.  Once she gets passed the awful side effects, she does much better.  Of course she is still really tired and feels run down but the colds and viruses are essentially gone. 

Unfortunately, it only stays in her system for about 21 days.  We are coming up on the 21 days so it will be interesting to see what she comes down with next.  Her B-Cells have still not returned which to me is neither good nor bad. 

Here's why.  As soon has her B Cells return that signals her immune system to rev up.  That revved up immune system begins destroying her platelets and we start the whole nightmare of Immune Thrombocytopenia Purpura all over again.  Our doctors have already made it clear that they will not approve any other treatment besides the chemo agent Rituxan so she gets signed up for another two months of that.  Her immune system will die, the platelets will come back and so will all the viruses and bacterias.  IVIG w…